Bright mind reaches to break dark bonds

Jul. 8, 2013

Chris Johnson talks about his future on Tuesday at his home in Sioux Falls. / Jay Pickthorn / Argus Leader

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He is, by all accounts, brilliant, fluent in French, conversant about the great playwrights, from Molière to Chekhov to Samuel Beckett.

But what does Chris Johnson do with all that intellect? How does a 33-year-old body confined to a wheelchair by the cruel circumstances of birth unleash its beautiful mind?

The days grow long in the West 10th Street home he shares with his father as Johnson struggles to divine those answers.

Three years ago, the Argus Leader featured him as he finished his time at Augustana College — wrapping up double majors in French and English even as he struggled with the social isolation that can torture people with disabilities.

He had written an essay in French that was published in an esteemed French journal. He knew the language so well that instructors at Augustana sometimes turned to him for help in translating a French word to English.

Johnson and his 3.95 great-point average had so many plans — to seek a master’s degree in French at the University of Montana, or perhaps pursue a Fulbright Scholarship and study overseas — that the future, like his mind, seemed limitless.

Yet three years have passed now, and the future still waits on him.

“The problem,” he said, “is that I live in a mindset of negativity and fear and doubt. It’s largely a self-confidence issue. I acknowledge that.”

It’s not easy to build confidence when life cheats you from the beginning. Johnson was born three months prematurely. He suffered three bouts of oxygen loss at birth. The resulting damage to his brain left him unable to walk and little movement in his arms and head.

Then, at age 12, he underwent surgery to remove the tops of his femurs to alleviate his arthritis and bone-grinding pain. The depression that would follow — born of the ensuing social isolation and loneliness and his own view of himself as somehow monstrous — would come in waves and nearly consume him.

“He is very attracted to the Frankenstein mythos,” Mitch Harris, an English professor at Augustana, said of Johnson three years ago. “I’m sure Chris has a dark side. I’m sure there are moments where he goes places most of the rest of us don’t and can’t.”

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In many ways, the social interaction that came with his Augustana experience kept that dark side at bay. But shortly before his graduation ceremony in May 2010, Johnson discovered that he was one course short for his English major. His dreams were about to dissolve.

No problem, Augustana officials told him. He could take the course online and could have until the end of his first semester at the University of Montana to finish it.

But Johnson’s academic success had always relied on classroom interaction. Online offered none of that. And there was another issue. Johnson’s father, Gene, had been his rock through his Augustana days — getting his son ready each day, cleaning him, dressing him, driving him to classes, even turning the pages on his books for him.

When Chris went to Missoula, his care was taken over by his older brother, Gene Jr. But their personalities would clash, Johnson said, and his dreams slowly withered in the fallout.

There were two years of starts and stops at the University of Montana. Finally, last summer, Gene Johnson Sr. drove out to Missoula to get his son, determined that he was coming home to Sioux Falls to finish his last class and get that degree.

Sandra Looney, an English professor at Augustana, offered to instruct him one-on-one in the world literature drama course he needed. They met two days a week, two hours at a time, to dissect and analyze the great playwrights.

“For me, Chris was just this kind of light,” Looney recalled.

What he showed her was what she called a “remarkable intellect,” and an ability, through his own life, to find the joy, sorrow and all other manifestations of the human condition that are revealed in the literature they read.

“Chris obviously knows what suffering is,” Looney said. “He can bring it to bear in a way that I think very few can. And what I saw was, in reading and discussing these plays, they would sort of untrap him for a moment and transport him to an area that he otherwise doesn’t have.”

It was a good experience for both of them, they say. But now the man in the wheelchair must figure out what happens next.

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His counselors with vocational rehabilitation, the agency that helped him pay for his undergraduate education, would like to see him turn that knowledge into a job. His counselors and his father think there could be an opportunity with a Canadian-based wind turbine company, Marmen, that is coming to Brandon. Based in Quebec, that company could have a need for a French-speaking American, Gene Johnson said.

“I understand that,” his son said. “But at this point in my life, I don’t feel qualified for or capable of any sort of meaningful work.

“I recognize that I’m emotionally and socially underdeveloped, and I need to acquire more life experience.”

Sounds simple. It is anything but that for a young man who yearns to be more autonomous but understands that he always will be dependent on someone else for his care.

So what will Chris Johnson do? How does he step out of his protective cocoon and find what he so desires — that tantalizing combination of intellectual interplay and social interaction? How does a mind trapped in a useless body really experience life the way it wants to?

“I know he’s got at least two books in his head right now that he needs to write,” his father said. “I would think that’s a possibility.”

Or maybe graduate school, Chris Johnson said, though he would need his 71-year-old father’s help for that.

An inventor, Gene Johnson said he’s got a patent on at least one device and, if he could make any money off it, he would love to fly his son over to France where he could teach English to the French and take classes while he’s at it.

It all sounds reasonable. Yet the days grow long in that wheelchair over on West 10th Street.

“I need to break free,” Chris Johnson said. “But my fear and doubts: I can almost equate them to an addiction. It’s like a drug addict. I know it’s a bad thing, it’s debilitating and holding me back. But it’s something I cling to. I have to break free. If I want to have any kind of life, I must break free.”